That's okay, so am I. In my own way. The LC way. After months of being unable to be busy at all, I am busy with things that I never even gave a thought to in the past... I am busy in ways that most busy people would not even give a thought to. But I can see that they are far busier than me. In fact, I am in awe of how busy they are!
There are less of them than ever, likely fallen prey to this new illness too, there are more and more of us to cater for... The imbalance is tangible. We just have to live with it and keep busy ourselves with what I would refer to as 'supported self-care'.
The GPs do not know what to do with us so the Post Covid Services are a blessing; they recommend certain activities to promote recovery and say they'll be in touch in about three months... It's been over four months, now, but I don't mind; I still have much to achieve to complete the tasks that they have set me to improve my current quality of life. I am on my last essential task: Reading and digesting the Oxford Long Covid Self-Help Guide, purchased on their advice.
So far I have:
- Received support from the Community Rehabilitation Team and put into practice all their gem-like advice, the most life-changing one being:
Keeping my Activity Journal/Fatigue Diary - initially designed for ME and CFS patients, it has been a godsend to monitor what I am able to achieve and how to avoid the Boom & Bust cycle.
Even this is another activity to fit in the day, with very little energy to go round, but it is so worth it! - Ensured that I spread out the energy cost of various activities over the day and week, to ensure a good balance of mental and physical stimulation, without exclusion - this has been a painstaking effort!
- Used breathing exercises (even singing) to overcome breathlessness and dizziness.
- Learnt to include periods of adequate rest in my daily timetable - and not skip them!
- Kept a daily note of my fatigue levels and reported these onto a wall calendar so I have a visual reminder of how well I am doing.
- Used my i.phone alarms to ensure that I do my physio exercises throughout the day, don't forget my medicines and supplements, keep an eye on my steps over the day, week, month...
- Walked around my flat confidently with my trolley-walker and been able to straighten my back as I do so.
- Used my grab rail and shower stool effectively to make personal care less of an unsurmountable task!
- Got up, washed and dressed most days, even when fatigue levels reach a 9/10 and I end up spending my day lying on the couch in the lounge.
- Got out for a walk with my rollator (walker with seat) at least once a week.
- Improved my social connections from 0 to 5 by attending a bi-monthly Knit & Natter group down the road, with friends I have known for 20 years and feel at ease with; it is a small group, in a large hall, so my sensory issues are kept in check and I feel safe there.
- Made myself useful by putting my crochet skills to good use for the HCPT 141 group.
- Organized my interior so as to feel less overwhelmed by the clutter and see a way through the mess to clear out and sell a few no-longer-required possessions: Most shoes and boots, since I cannot wear anything but flip-flops (or oversized wellies) without hurting my foot bones; the full wetsuit that I only used twice, since I am no longer able to struggle into it, let alone peel it off without hurting my joints; a number of clothes that are too tight to struggle into or simply cannot be worn without shoes... I am still holding off selling or donating my teaching resources, as I do not know whether I shall be granted Ill-Health Retirement.
But one thing is sure, downsizing to simplify my life to its now basic level makes complete sense. If I can raise some funds to afford some additional medical pursuits unavailable on the NHS, or to simply put the heating on in cold weather, all the better! - Considered a future where things may not improve but I can actually live my life just as it is by adapting to my new limitations and learn to reach a fulfilling level of productivity over time, by planning and pacing diligently - and rejoycing at every little achievement!
- Set some short-term and mid-term goals, such as additions with the CAB, housework and light DIY, such as adapting my e.bike in order to enjoy cycling safely; I must acquire some adult stabilizers (another significant expense) as I am not steady enough and have not used my bike for 7 months).
We're all busy. Life goes on.
It has changed a lot and some of us have had to accept it and look forward to more changes in the community and in human society as a whole in order to feel less outcast; the pandemic is far from over and even if people are happy to learn to live with it and 'risk it' literally, unless changes are made at a societal level, more zoonotics will plague us and remind us to live gentler lives if we are to enjoy easier times. It would be a shame to miss out on what planet Earth has to offer...
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